scoping exercise on generalist services for adults at the ... · stephen barclay 3, sarah forrest3,...

Scoping exercise on generalist services for adults at the end of life: research, knowledge, policy and future research needs

Report 1: Overview and recommendations for future research in generalist end of life care

Report for the National Co-ordinating Centre for NHS Service Delivery and Organisation R & D (NCCSDO)

Prepared by:

Irene J Higginson1, Cathy Shipman1,2, Marjolein Gysels1, Patrick White2,

Stephen Barclay3, Sarah Forrest3, Allison Worth4, Scott Murray4, Jonathan

Shepherd5, Jeremy Dale5, Steve Dewar6, Marilyn Peters2, Suzanne White2,

Alison Richardson7, Matthew Hotopf8, Karl Lorenz9, Jonathan Koffman1

Scoping exercise on generalist services for adults at the end of life

© NCCSDO 2007 2

1 Department of Palliative Care, Policy & Rehabilitation, King’s College

London.

2 Department of General Practice & Primary Care, King’s College London

3 Department of Public Health and Primary Care, Institute of Public

Health, University of Cambridge

4 Primary Palliative Care Research Group, University of Edinburgh

5 Centre for Primary Health Care Studies Warwick Medical School,

University of Warwick Coventry

6 King’s Fund, London

7 Florence Nightingale School of Nursing & Midwifery, King’s College

London

8 Department of Psychological Medicine, Institute of Psychiatry, King’s College London

9 School of Medicine, University of California, Los Angeles USA

Address for correspondence:

Professor Irene J Higginson

Department of Palliative Care Policy & Rehabilitation

King’s College London

Weston Education Centre

3rd Floor, Cutcombe Road

Denmark Hill

London SE5 9RJ. www.kcl.ac.uk/palliative

Acknowledgements

We are extremely grateful to all those who took part in this scoping

exercise. We were working to very tight deadlines and this often meant

that individuals participating in the consultation had to move pre-

arrangement commitments or contribute when on leave. We very much

appreciate their enthusiasm, hard work and approachability. We are

grateful to numerous colleagues for advice and support, particularly

Naomi Fulop. We appreciate very much the support of colleagues in

Edinburgh, particularly Marilyn Kendall who helped with the development

of the questionnaire for patients and to David Chinn for help with the

email questionnaire. We thank those who participated in the literature

review and who generously shared their databases. For help with

literature and facilitating our meetings we would like to thank Fliss

Murtagh, Barbara Gomes, Sue Hall, Elizabeth Summers and Dan Munday.

We are grateful to staff at the King’s Fund for helping with literature

searching and also for helping with the consultation meetings, particularly

Clare Bawden. For administrative help we are very grateful to Jenny

Lunan and Emma Camplejohn. We would also like to thank Genevieve

Casey, Stephan Peckham, Damian O’Boyle and Emma Hawkridge at the

SDO for their guidance and support, and the SDO for funding the scoping

exercise.


© NCCSDO 2007 3

Table of contents

Acknowledgements .....................................................................2

Table of contents........................................................................3

Executive summary ....................................................4

Chapter 1 Introduction..............................................8

Chapter 2 Background...............................................9

Chapter 3 Aims and objectives ................................10

Chapter 4 Methods ..................................................11 4.1 Methods for the literature review ......................................... 11

4.1.1 Search strategy..........................................................11

4.1.2 Inclusion/exclusion criteria ..........................................11

4.1.3 Data extraction and Analysis........................................12

4.2 Methods for the consultation ............................................... 12

4.2.1 The Nominal Group Technique .....................................13

4.2.2 The consultation of representatives from English national organisations ............................................................13

4.2.3 Different geographical consultations .............................14

4.2.4 Data collection and analysis.........................................15

4.3 Integration of literature review and consultation, and outputs .. 15

Chapter 5 Results ....................................................16 5.1 What is meant and understood by the term generalist services for

people at the end of life....................................................... 16

5.2 Mapping the existing knowledge base: summary of results from literature review ................................................................. 17

5.3 To identify methodological and ethical challenges encountered in conducting the research ...................................................... 20

5.4 To consult with national and local stakeholders in England and Scotland. ........................................................................... 21

5.4.1 The consultations .......................................................21

5.4.2 The main research themes results from the consultation .22

5.5 Priorities for future research ................................................ 24

5.5.1 Service provision and models of care ............................24

5.5.2 Out of hours care .......................................................24

5.5.3 Non cancer and older people........................................25

5.5.4 Place of care and death...............................................25

5.5.5 Patient and carer experience........................................26

5.5.6 Resources and health economics ..................................26

5.6 Limitations and conclusions ................................................. 26

References ...............................................................29

Appendix ..................................................................31 References for the appendix ...................................................... 43


© NCCSDO 2007 4

Executive summary

Aims

This report presents recommendations for future research to be

commissioned by the SDO on generalist end of life care for adults.

The aims and objectives were to define what was meant and understood

by generalist end of life care; to map the existing knowledge base; to

identify methodological and ethical issues; to consult with national and

local stakeholders and to determine the extent to which existing

knowledge and research mapped against priority issues identified by

stakeholders.

Methods

A scoping exercise was undertaken to determine end of life care research

priorities. This included a literature review and a consultation with key

informants who were associated with care at the end of life.

The literature review was of recent publications and reviews. It included

an assessment of the number, type of studies undertaken and position in

the hierarchy of evidence.

The consultation exercise was undertaken in four different UK

geographical localities: London, Cambridgeshire and the East of England,

Warwickshire and Scotland. A separate consultation exercise was carried

out with key informants of national organisations in England. A modified

form of the nominal group technique was used to identify the range of

views and develop a broad consensus on key priorities for future

research.

The priority research subjects from the consultation were compared with

the results of the literature review, and four broad research themes were

developed.

Results

What is meant and understood by generalist end of life care?

The literature review found generalist end of life care to be a broad and

diffuse concept, which was used more in discussion amongst academics

than amongst practitioners and literature based on research.

Participants in the consultation held varying perceptions of ‘generalists’.

For some this was linked to primary rather than secondary care.

Variations were also found in the definition of end of life care. For some


© NCCSDO 2007 5

this was the last few days of life but for others it was an overarching

phase which also included palliative and terminal care.

Our definition of generalist care for the purposes of this scoping exercise

referred to care provided by practitioners whose working remit was not

exclusively concerned with specialist palliative care. This definition did

include specialists in other clinical areas. By ‘end of life care’ we mean

care provided within the last year/s of life to anyone with any advanced

progressive disease likely to shorten their life.

To map the existing knowledge base

The literature review found generalist care at the end of life to be an area

of disparate research activity defined more by the academic community

than by practitioners or patients. The extent of published studies was

limited and this tended to be concentrated at the lower level of the

hierarchy of evidence. Little secondary research was identified. Service

development and innovation in this area typically comprised complex

interventions which are methodologically and ethically challenging to

undertake.

Most research was concerned with understanding what was going on

(experiences of and issues with care provision), less concerned with

finding solutions to problems and very little with testing or evaluating

interventions.

The majority of studies on generalist care at the end of life were

concerned with service delivery organisational issues and health

professionals’ experiences. Less were concerned with patients’

experiences and only three with carers’ experiences. Half of the studies

were set in community settings and very few set in hospital.

To identify methodological and ethical issues

The difficulty of undertaking research with patients and carers at the end

of life was raised in the consultation together with problems of knowing

the best time to engage with users.

Demonstrating effectiveness was considered to be a methodological

problem in the consultation as was implementing the traditional methods

for complex interventions. From the literature review, flexibility was felt

to be important in undertaking research, gaining a good understanding of

the context of an intervention in order to see how it might apply

elsewhere, and the use of mixed methods.

Consultation with national and local stakeholders

Two hundred and ten participants were involved in the consultation

events in London, Cambridgeshire, Warwickshire and Scotland and with


© NCCSDO 2007 6

the representatives of English national organisations. There was

enthusiastic participation and a range of generalist end of life care

research subjects were identified.

Between 13 and 18 research subjects were identified at each

consultation. The priority subjects were aggregated and ordered into two

key themes with two major cross-cutting themes. The first key theme

was ‘models of care’ which included out of hours care, generalist

provision, care for patients suffering from non malignant disease and

access to care. The second key theme was ‘place of care’, including the

home, hospital and care home.

Patient and carer experience was identified as a major cross-cutting

theme that should be an important component of all research

commissioned on generalist end of life care.

Resource and health economic evaluation was the second cross-cutting

theme which should be an important component of research.

Determining the extent to which existing knowledge and research

mapped against priority issues identified by stakeholders

A comparison of the key research themes arising from the consultation

and key issues emerging from the literature review led to the following

recommendations for future research:

Recommendation 1

Primary research to define and evaluate models of collaborative working

in primary and secondary end of life care. This research would employ a

systems approach whereby the different forms of organisation (for

example General Practitioners (GPs) and District Nurses (DNs) working

collaboratively in the community, or medical and nursing teams in

hospital settings) were investigated within the context of collaboration or

shared care with specialist palliative care and social services. Studies

should identify current models of organisation, establish how well they

work, identify best practice and define models that lead to optimum

outcomes for patients, families and services, as well as factors associated

with gaps in provision. Studies should investigate and/or test models of

care from the perspective of patients and carers as well as from that of

health care professionals and ideally consider costs.

Recommendation 2

Primary research to define and evaluate models of provision of generalist

out of hours care at the end of life within a systems approach, taking

account of different providers (for example GP out of hours'

organisations, DN services, ambulance services, pharmacists, social

services, specialist palliative care). The research would assess how


© NCCSDO 2007 7

service configurations work in different geographical areas, identifying factors that lead to improved patient care including for example

information transfer, appropriateness of response, availability of drugs,

good channels of communication between providers, clear role remits and

good collaborative working as well as factors that prevent optimum care. Models of good practice would be tested in other geographical areas and

under different conditions. The experiences and preferences of patients

and carers should form a major component of the assessment of the

impact of the care models and the costs of different models should be

considered.

Recommendation 3

A systematic literature review (including grey literature) of place of care

and place of death of people dying from non malignant disease. This

would identify factors affecting transitions of care as well as place of

death for people dying from a number of non malignant diseases such as

COPD, heart failure, stroke, dementia and neurological conditions.

Recommendation 4

Primary research to define and evaluate models/organisation of care of

the dying in different settings including A&E; to assess the impact of

different forms of care, together with an assessment of the additional

impact of, for example, the Liverpool Care Pathway and the hospital

palliative care team. This research should be undertaken from

patient/carer and professional perspectives and focus particularly on the

experience of patients dying from non malignant disease. More research

should be undertaken on how preferences are formed and develop over

time.


© NCCSDO 2007 8

Chapter 1 Introduction

This report presents recommendations for future research to be

commissioned by the SDO arising from a scoping exercise to determine

priorities for improving generalist end of life care for adults. The scoping

exercise comprised a literature view and consultation exercise with

providers, commissioners, policy makers and users and academics

associated with end of life care services. Both documents can be found in

separate accompanying reports.

Most end of life care is provided by generalists. By ‘generalists’ we mean

practitioners whose working remit is not exclusively concerned with

specialist palliative care. This includes those working within primary,

secondary, tertiary care, social care and the voluntary sector, and

includes many who are specialists in their own sphere of expertise. Where

working remits also include care of those with chronic, acute or minor

illnesses, these are defined as ‘generalist’ for the purposes of this scoping

review. By end of life care we mean care provided within the last year/s

of life to anyone with any advanced progressive disease which is likely to

shorten their life.


© NCCSDO 2007 9

Chapter 2 Background

Most care at the end of life is provided in a generalist setting: the home,

a care or nursing home or hospital. Practitioners in primary and

secondary care provide most care together with colleagues from social

care and specialist palliative care (largely for cancer patients). The

significance of generalist care has been recognised through the NHS End

of Life Care Programme which has provided support and opportunities to

increase skills to generalists (http://eolc.co.uk/eolc). Models of care such

as the GSF, LCP and PPC have been prominent in this respect, as has the

education and support programme for District and community nurses in

the principles and practice of palliative care. The patient choice agenda

has also been a key motivating factor in service development to enable

choice of type and place of care at the end of life. However, much less is

known about generalist end of life care than about specialist palliative

care service provision. Much less is also know about the care of patients

suffering from non malignant disease at the end of life as much research

has been focused on the care of cancer patients. The SDO therefore

commissioned a scoping exercise to identify key research priorities that

would inform future research funding.


© NCCSDO 2007 10

Chapter 3 Aims and objectives

The aim of this scoping exercise was to map current research, knowledge

and policy on generalist services for adults at the end of life to identify

specific topics for research to inform future commissioning by the SDO

programme.

The objectives were to:

• To define what is meant and understood by the term generalist

services for people at the end of life

• To map the existing knowledge base and policy context, including

recent publications, and information on work in progress (where

available or anticipated); to appraise a wider range of published and

unpublished grey literature than undertaken previously, including

qualitative as well as quantitative research, and extend previous

reviews to include non cancer patients, policy issues and material on

best practice.

• To identify the methodological and ethical issues encountered in

conducting the research and successful approaches to research in

this field

• To consult with national and local stakeholders (including statutory

and voluntary organisations) about the current policy and most

pressing research questions concerning the delivery and organisation

of generalist services for end of life care

• To determine the extent that existing knowledge and current/planned

research maps against the priority areas raised by stakeholders in

order to identify gaps and future priorities for research


© NCCSDO 2007 11

Chapter 4 Methods

This scoping exercise comprised two components of work. Firstly a

literature review identified the scope and quantity of research undertaken

more recently on generalist services for adults at the end of life, building

on previous systematic reviews. Secondly, a consultation exercise was

undertaken in different geographical areas of England and in Scotland.

The aim of the consultation exercise has been to identify research

priorities from the perspectives of practitioners and commissioners within

statutory and voluntary organisations and from users. Full details of the

methods and results are available in the attached reports on both the

literature review and the consultation.

4.1 Methods for the literature review

4.1.1 Search strategy

The search strategy included identification of existing systematic and

relevant reviews, electronic database searches, and hand-searching for

grey literature, of key journals and of reference lists, as detailed below.

This included some very major reviews (e.g. those for the NICE guidance

on supportive and palliative care, UK(Gysels & Higginson, 2004), the

AHRQ systematic review(Lorenz et al, 2004), the review of psychosocial

support(Shipman et al, 2002), a review of primary palliative care for

cancer patients (Burt et al, 2004), the WORD (Welsh Office) review on

models of palliative care (Snooks et al, 2006), related reviews from

scoping exercises and documents containing evidence, which were written

for use in policy.

In view of the number of major systematic reviews, and the policy

developments in recent years, we concentrated on the most recent

reviews and original studies. We searched MEDLINE, EMBASE, CINAHL,

PsycLIT, ASSIA, HMIC, Cochrane Databases, CANCERLIT, databases held

at the King’s Fund and collections of specialist literature held by the

project applicants for the last 5 years for original studies relevant to

generalist palliative and end of life care. We developed search terms to

retrieve all relevant literature (see Report 2).

4.1.2 Inclusion/exclusion criteria

Studies were assessed for inclusion on the basis of relevance and design.

To be included, a study or review must have addressed generalist end of

life or palliative care and/or include patients receiving care in a generalist


© NCCSDO 2007 12

setting (home, care or nursing home, hospital) including some care from

generalists. We included a broad range of study designs (quantitative and

qualitative), systematic reviews, reviews and consensus opinion papers

but not individual opinions or single patient case reports. Studies were

excluded on specific methods of treatment or drugs, concerned with

children, critical illness and euthanasia or physician assisted suicide.

Given the focus on British healthcare, non-English language publications

were excluded (most literature is written in English).

There was no time limit applied to research integration studies identified

as relevant. The individual studies, however, were limited to a sample of

studies which had appeared in the time period between 2004-2006, as a

number of important reviews synthesising the evidence on end of life care

had appeared in 2004. We did not grade individual studies in detail, but

the systematic reviews were graded for methodological quality using a

standard grading scale with criteria developed by Russell et al (1998).

4.1.3 Data extraction and Analysis

Systematic Reviews

Recent research integration studies in this field were read, reviewed and

categorised according to type of review, its function, the topics addressed

and the type of evidence included.

Individual Studies

Data were extracted into tables documenting the reference number – for

easy retrieval in the bibliography – study population, type or method of

study, country of origin, and theme, sub-theme and primary focus of the

study. A separate table documented the main findings or statements of

the paper. Because of time constraints and the nature of the scoping

exercise this information was based on abstracts and summaries rather

than the full paper. If the abstract lacked detail or was ambiguous, the

full paper was read and investigated.

The evidence was analysed according to the information it provided on

groups of participants targeted by the studies, themes featuring in the

reviewed sample, type of data collected, settings where studies were

carried out, type and design of the references, and purpose with which

the studies were conducted.

4.2 Methods for the consultation

The consultation took place at a national level across England, with

representatives of national organisations, and at a local level with

providers, commissioners and users of services across London,

Cambridgeshire and East of England and Warwickshire. In Scotland both


© NCCSDO 2007 13

national organisations and a range of providers and users across the

country were included. The aims of the consultation were:

• to explore what is understood by generalist end of life and

palliative care, and what constitutes effectiveness and cost-

effectiveness in this context

• to explore what are the clinical, IT, skill mix, educational and

workforce issues that are faced in providing end of life (including

out of hours) care

• to explore what research they would find useful, either in their

own context of work or that of the groups with whom they work,

and their priorities for such research

• to identify information, knowledge, models of care and practice

already developed, to identify areas of potential good practice

and to supplement the findings of the literature review.

4.2.1 The Nominal Group Technique

The Nominal Group Technique was used in a modified form to develop a

consensus from the consultations. The method involves seeking views,

discussing and clarifying issues and then voting on priorities (Jones and

Hunter, 1995). The following are the steps followed in each of the five

consultations:

Drawing up list of key informants

�

Selecting a sample and interviewing or sending questionnaires

�

Categorising responses into key research themes

�

Holding consultation meetings – to discuss, clarify and prioritise

responses

�

Each consultation compiling a short report

�

Reports including priorities for research aggregated

4.2.2 The Consultation of representatives from English

national organisations

Relevant national stakeholders were identified from five main groups:


© NCCSDO 2007 14

1. National Policy / Commissioners, including the Cancer Policy Team

and other relevant policy officers at the Department of Health, and

key representatives from the NSFs, SHAs.

2. Primary care professional views were sought from the Royal

College of General Practitioners and the Royal College of Nursing,

the NHS Confederation and other national organisations.

3. Representatives from user organisations were contacted, including

Age Concern, Cancer Black Care, Long Term Medical Conditions

Alliance, the MS Society and the Parkinson’s Disease Society

4. Representatives from Specialist Palliative Care Services, including

National Hospice and other charitable organisations.

5. Academic departments known to undertake work on end of life

care were contacted from both within and without the 2 NCRI

SuPac collaboratives and across Palliative Care, Nursing, Primary

Care and other Departments.

A list of potential participants was drawn up for selection on a purposive

basis to gain wide representation from between and within the above four

categories.

4.2.3 Different geographical consultations

The consultations in different geographical areas took place in London,

Cambridge and the East of England, Warwickshire and Scotland to gain a

spread of opinion informed by different geographical and socio-economic

contexts. Consultation was facilitated by research co-applicants based

within these localities. Within each of the English regional and Scottish

national consultations the aim was to select 30 key informants from

among the following groups of practitioners, commissioners and users:

• Commissioning Stakeholders [SHAs, PCTs, Social Services, Acute

Trusts in England: the Scottish Executive, Health Boards, PCTs and

CHPs in Scotland]

• Generalist Service Stakeholders [Local GPSIs, DNs, CNSs, GPs,

acute trust clinicians, care homes, social services]

• Local patient / carer groups (e.g. carer groups, local branches of

user-led organisations, and other user forums, including local

service groups).

• Specialist Service Stakeholders [Hospices, Specialist Palliative

Care, Cancer Networks, Cancer UK, NSFs, Specialist user groups,

clinical nurse specialists]

Participants were again selected on a purposive basis from amongst the

above categories of informants, and further contacts gained by their

recommendation.


© NCCSDO 2007 15

4.2.4 Data collection and analysis

The views of participants were sought using a short semi-structured

questionnaire that was standardised for all 5 consultations. This was

developed collaboratively with the different research teams, project

advisory group and grant collaborators, and piloted within King’s College

London. Further questionnaires were developed for completion by email,

for voluntary groups and for users. Full details can be found in Report 3.

A thematic analysis was undertaken on responses made to each

consultation to identify key research themes. We sought to identify

suggestions for research and code these suggestions into main themes.

Many practitioners were unused to research. While all were able to

identify problems and good practice, some found difficulty in converting

these issues into research questions. It was thought important not to

minimise the views of those who deliver services, and so where strong

issues were identified but robust research questions lacking, the research

team help practitioners to formulate how these might be translated into

areas of research.

The nominal group technique enables the development of a consensus

about research priorities by bringing people together to discuss, clarify

and vote. All key informants who had provided information either through

an interview or email questionnaire were invited to attend one of the

consultation meetings. These were held in Cambridge, Coventry,

Edinburgh and two in London (for the regional and English national

meetings). These meetings provided an opportunity for developing and

voting on the key themes. Those unable to attend meetings were offered

the opportunity of postal or email voting.

4.3 Integration of literature review and consultation, and outputs

The key priorities for research identified in the consultation exercise were

compared with findings from the literature review. The table of

comparison can be seen in Appendix 1. Comparison also took account of

known existing research in order to identify recommendations for future

work.


© NCCSDO 2007 16

Chapter 5 Results

5.1 What is meant and understood by the term generalist services for people at the end of life

The review of literature found generalist end of life care to be a broad and

diffuse concept which does not feature in much of the literature identified.

Generalist palliative care is a term that is primarily used in academic

discourse among researchers with an interest in palliative care. It

suddenly gained in importance as a result of the establishment of the

NHS End of Life Programme (NHS, 2006) which carried the vision outlined

in the White Paper ‘Our Health, Our Care, Our Say’ (Department of

Health, 2006), towards health care in the community and support for

patients to die in their place of choice, which is most often the patient’s

home. These policy developments are now taking place on the territory of

generalist palliative care. Delineating this area is not an easy task as

there is not an agreed understanding of what generalist palliative care

stands for exactly. The concept is often defined in negative terms, as the

type of palliative care not provided by specialist teams, which leaves a

very wide field of enquiry.

There were considerable variations in definition of end of life care and its

relationship to palliative and terminal care emerging from the

consultation. For some, end of life care was similar to terminal care and

comprised care within the last few days or weeks of life undertaken under

the broad overarching approach of palliative care. For others end of life

care preceded terminal care and for some comprised up to the last year

of life encompassing palliative and terminal care. It should be noted

however, that terminal care itself also had varied definitions. For many,

end of life care comprised a phase when it was clear that a patient was

going to die and reflected a change in emphasis from curative to

supportive and palliative care for patient and family. All of these

definitions appear to be based on a ‘prognosis’ or time period, rather than

specific patient/family needs or circumstances.

The consultation also revealed variations in perceptions of the role of

generalists and of the applicability and suitability of the term. Some

informants, particularly in primary care, were quick to identify themselves

in the role of generalist but did not necessarily identify hospital colleagues

as generalists. Generalists were considered to deal with all conditions on

a day to day basis including long term and acute care such as GPs, DNs

and Geriatricians although all three could also be seen as specialists in

their own field. Generalists could also include all those working in health

and social care in acute and rehabilitation settings, in continuing care,

nursing home and residential care. The role of the generalist was seen to


© NCCSDO 2007 17

include co-ordination of care, being a key worker and gatekeeper and

referrer to other, particularly specialist palliative care services. There was

a suggestion that the role of the generalist was changing within primary

care. In the past many would have known their GP. Although this was felt

to be true in some settings, it was felt by some that increasingly people

did not have a relationship with a particular doctor. The theme of the

disengaged generalist, who was less involved in end of life care, was

identified within the Cambridge consultation and also in Scotland. While

our brief was to understand perceptions of care provided by practitioners

other than specialist palliative care professionals, the importance of

recognising the role of hospital specialisms was also frequently reiterated.

5.2 Mapping the existing knowledge base: summary of results from literature review

The review presented a broad overview of the current literature that

addresses issues in generalist care at the end of life. Searching for issues

that are central to an area that is not well delineated is challenging. For

the identification of secondary research we only found one unpublished

thesis on palliative care in primary care that brought together some

essential components on which to build a framework for capturing

generalist care at the end of life (Department of Health, 2006). The other

secondary research presented focused in different ways on discrete areas

that are part of this field, to constitute a broad overview of what

generalist care represents. We targeted the most recent studies that

provided a synthesis of the available evidence covering documents that

were written for different purposes, on a wide variety of topics, and

applying diverse methodologies of synthesis. As this scoping exercise was

largely to identify research priorities to be used in the current policy

context we restricted ourselves to the reviews that had general relevance

to generalist care. We excluded reviews that investigated issues unique to

specific countries. Reviews on symptoms or conditions that were common

in advanced disease were included. For the individual studies, issues

pertaining to specific countries were also included.

Generalist care at the end of life typically requires complex interventions

and many of the themes are inter-linked and cannot be considered in

isolation. It became apparent from the mapping of the evidence that

generalist palliative care is a multidimensional concept involving a variety

of conditions, settings, carers, services, states of being, values and

priorities and interactions with specialist palliative care.

Two systematic reviews were included that provided negative evidence,

one was on access to specialist palliative care, which identified the types

of patients that are usually excluded from specialist palliative care and

thus tend to receive the care from generalist providers (Barclay, 2005).

The other negative evidence came from a systematic review on specialist


© NCCSDO 2007 18

palliative care teams, showing the gaps in knowledge on the functioning

and ways of operating with different combinations of roles and skills

(Higginson et al, 2000). The integration studies were often exploratory,

concluding that there was a dearth of evidence on the research topic.

The results focusing on patient groups in the individual studies showed

that most of the studies reported to target a ‘general’ group with

palliative care needs. We assumed that this was a mixed diagnostic

group. Some illnesses with definite palliative care needs, such as

neurological conditions, were not identified by the searches for individual

studies.

The data were collected mostly on service delivery organisational issues.

Where studies focused on views and experiences, data primarily collected

from health professionals and patients’ perspectives were less well

represented. The evidence on carers was scant. To ensure that

meaningful definitions and criteria are developed and applied, patient and

carer’s trajectories and interactions with care need to be understood. The

studies collected their data mostly from the community in general without

specifying the exact places in the abstracts. Where the setting was

specified most of the studies focused on home care.

What the distribution of designs across this research field means becomes

clearer when examining the studies’ purpose. We could discriminate three

levels of what the enquiry wanted to achieve. From this, we found that

the great majority of studies investigated ‘what is going on’ in generalist

care at the end of life. Studies were less often directed to finding

solutions to problems: ie ‘what needs to be done’. Only a few studies

were conducted with the purpose of testing or evaluating interventions:

‘let’s try this or see if this works’.

Restructuring of funding, organisation and delivery of health services is

almost continuous in the UK’s NHS. Reforms in policy happen rapidly and

much research is often only available when it eventually gets published.

We found some very useful syntheses of the literature directly placed in

the context of current policy. However, policy analyses become quickly

outdated as health services are constantly evolving and are in need of

ongoing evaluation. Within the evidence identified, we could see that

studies are now starting to appear that address some of the key foci in

current policy. The results of the Department of Health (DH) three-year

education and support programme for District and community nurses

(DNs) in the principles and practice of palliative care have been published

and are available on the DH website (www.dh.gov.uk). The use and

functioning of the tools, which have been promoted nationally have been

studied by small research projects awaiting the results of the ongoing

larger research programme on the GSF, carried out by the University of

Warwick. The systematic review on home death included in this scoping

study was based on 58 studies. However, much more needs to be done in


© NCCSDO 2007 19

this area as this review showed the lack of evidence on the quality of

home deaths, problems with transitions in care and the need for

expansion of the model developed in this review in the light of new

evidence (Gomes & Higginson, 2006).

Other places of care in the community are now being studied. These

include community hospitals and nursing and residential homes and the

needs they have for support to realise good quality palliative care in these

settings. Out-of-hours-care is one of the mechanisms to attain this goal

and this is now recognised in the literature that shows a number of

studies documenting obstacles and solutions to problems that were

developed locally. The workforce needed to fulfil the aim of good quality

care in the community featured over different categories and was directed

mainly to nurses with a variety of backgrounds and specialities, to GPs,

and more sporadically to the informal carer and the social worker. The

confusion of roles and ways of co-operating across professions appears as

an issue in this material.

Studies of the media and the messages they send to the general public on

the end of life were absent. Yet this is an important source of information

on community perceptions and attitudes, and an important resource for

raising awareness about the end of life, especially given the need for well-

informed and actively involved patients and informal carers.

Clear gaps were found regarding certain topics such as under-served

populations, no work on ethnic minorities was identified, neither was

anything found on groups such as prisoners. Studies on bereavement

were also lacking. Mental health at the end of life was poorly represented.

The systematic reviews on depression found very few studies and

identified the area of mental issues in advanced disease such as anxiety

or depression as little researched and receiving little attention from

services (Hotopf et al, 2002; Ly et al, 2002)). Also the systematic review

on advanced dementia identified very few empirical studies on this topic

(Sampson & Ritchie, 2005). No individual studies on technological

developments were found, which is important because these may support

community-based services.

The time in which the mapping of the literature had to be undertaken

limited the findings of this study. This scoping exercise should be

considered as a first step. We do not claim that we have provided a

comprehensive overview of all research activity in this area but rather

worked with a sample. Seeing the broad search strategies we worked

with, we believe that this is reasonably representative of the field. The

conclusions of this scoping exercise are constrained by the limitations of

the original primary studies. The analysis is largely based on the work of

one reviewer. In instances of doubt, members of the expert panel were

consulted to verify approaches or interpretations, but there was no

detailed second coding.


© NCCSDO 2007 20

From our review of research integration studies and scoping of the

individual studies (between 2004-2006) we conclude that:

• Generalist care at the end of life is a vast area with much disparate

research activity but little systematic initiative to achieve

understanding of the meaning of this term.

• Considering the scope of the field there are relatively few secondary

analyses such as systematic reviews.

• Published studies are concentrated at the lower level of the hierarchy

of evidence.

• This field typically contains complex interventions and conducting

these is methodologically and ethically challenging. There were few of

the ‘let’s try this’ evaluation studies and the evidence base for practice

is scant.

• Evidence related to current policy developments and its key foci are

sparse.

• Areas that have been covered most frequently include health

professionals’ roles, services (aspects of out-of-hours care and

community care), ‘models’ of good practice, quality of generalist care

in practice, place of care with the greatest concern for home care, and

education for generalists.

• There is still less work beyond cancer.

5.3 To identify methodological and ethical challenges

Respondents to the consultation were asked if they were aware or

concerned about any methodological or ethical issues in undertaking

research with patients and carers at the end of life. A key concern was

the difficulty of engaging with users at such a vulnerable time, and

understanding the best time to speak to patients and relatives,

particularly as not everyone wanted to talk about death. Other ethical

concerns included the patient’s capacity to make decisions and be

involved in research activity when very ill. There were concerns about

patient confidentiality and about participation in double blind trials. Gate

keeping by professional staff was identified as an understandable but

difficult methodological issue. Demonstrating effectiveness and measuring

appropriate outcomes, for example in achieving a good death, was

identified as problematic. The need to highlight end of life care as an

important area for research and funding was also suggested which could

be aided by improved dissemination of findings and implementation of

research.

Most of the studies identified by the literature review were concentrated

at the lower level of the hierarchy of evidence and there were only four

RCTs. Most studies were conducted with qualitative research designs and


© NCCSDO 2007 21

based on interview material and survey research. These are research

designs that are typically employed in areas that are relatively

unexplored. This does not mean that no more of these types of studies

are needed. This is a vast area of research and needs much more

exploratory and pilot work for the generation of empirically-grounded and

plausible hypotheses.

However, qualitative designs should not only be employed in the early

stages of research projects but are very useful when carried out alongside

experimental research to inform about processes and contextual issues.

Generalist care at the end of life is a complex area and requires

innovative designs, often employing mixed methods, to ensure both the

acceptability of the intervention, as well as reliable outcomes of its

evaluation. The four RCTs were high quality trials addressing service

delivery models to translate into practice in generalist end of life care,

and they were conducted with novel methodological approaches to

address the common challenges of this type of research in a palliative

care population (Abernethy et al, 2006; Gutheil & Heyman, 2005);

Mitchell & Abernethy, 2005).

One model which is particularly suitable is the MRC Framework for the

Design and Evaluation of Complex Interventions with phases of modelling

through to preliminary evaluation, ultimately testing the intervention in a

randomised controlled trial (Campbell et al, 2000). Where the conduct of

RCTs is impossible or inappropriate due to practical or ethical obstacles in

end of life research, well designed observational methods are valuable

alternatives for the evaluation of the effectiveness of health

services.(Black, 1996; McKee et al, 1999) New initiatives proposing more

flexible development of the MRC framework for complex interventions

appear promising. Preliminary suggestions have been made for the initial

stepwise approach to be undertaken as a more iterative

process.(Campbell et al, 2007) Greater account should also be taken of

the context within which an intervention is taking place to enable an

assessment of how transferable the model of care might be to other

settings. However, such an approach will require funders to support these

new designs, which initially may appear more costly, and will involve

sustained programmes, rather than short projects of research. However,

in the longer term cost benefits will be achieved, as the research will yield

better results.

5.4 To consult with national and local stakeholders in England and Scotland

5.4.1 The consultations

The consultation was undertaken with a wide range of participants

including practitioners, commissioners, policy makers, academics, users


© NCCSDO 2007 22

and the voluntary sector. It was less easy to engage professionals from

policy backgrounds. While efforts were made to secure the participation

of respondents from social care backgrounds, the majority of participants

were from health services. Engaging the participation of users was also a

key aim which was most successfully achieved in Scotland.

The areas included - London, Cambridgeshire and Warwickshire - are not

representative of all geographical and socioeconomic locations in England

but, given the limited resources and time available to the scoping

exercise, do provide perspectives from inner city, more rural and urban

locations. An opportunity to consult professionals in Newcastle was

identified, but unfortunately this arose too close to the completion of the

project and could not be taken up. The Scottish consultation was wide

ranging involving participants from cities to the Scottish islands.

The modified Nominal Group Technique proved useful to generate

consensus in each consultation. At the meeting the research priorities

were revisited and those attending were able to add to existing themes

and develop further themes after consideration. Those unable to attend

and who voted by post or email were unable to participate in discussion

and development of the themes. Not all participants returned their voting

forms, and responses were lower in the London and English national

consultations.

When the top six categories of each consultation were compared there

were common themes but also some variation. Sufficient key themes

were common to the top 6 categories of most consultations, however, to

redress concerns about any change in ordering that might have resulted

had more participants voted.

There was considerable enthusiasm amongst participants and concerns

from amongst health and social care, statutory and voluntary groups and

users that this was a vital area for health and social care. There were

many subject areas identified as important in addition to the main

priorities identified here (see Report 3).

5.4.2 The main research themes: results from the

consultation

From prioritisation of the research themes generated within the

consultation, our scoping found that the priorities for research in

generalist end of life care should include:

1. Research into models of care: defining and evaluating different forms

of organisation of service provision for:

- out of hours care

- different generalist models

- services for non cancer patients and older people


© NCCSDO 2007 23

- access to care and inequalities in provision

2. Research into the patient and carer experience.

3. Research to understand more about factors affecting place of care and

death, about the experience of dying, resource, support and care

needs within

- home

- hospital

- care homes

4. Resources and health economic implications

We suggest that the theme of patient and carer experience should be a

key cross-cutting theme providing a main focus for research concerned

with both service provision and place of care and death. The theme of

resources and health economics should be a second cross-cutting theme

to be taken into account with undertaking research within models of

service provision and place of care and death.

Models of care: Service

Provision

• Out of hours

• Generalist models

• Non cancer and older

people

• Access and inequalities

Place of care and death

• Home

• Care home

• Hospital

The patient/carer experience

Resources and health economics


© NCCSDO 2007 24

5.5 Priorities for future research

The top four broad themes for research generated from the consultation

were compared with the results of the literature review (Appendix 1) and

known ongoing research. Recommendations for future research were

made on the basis of this comparison.

5.5.1 Service provision and models of care

This is the largest area of suggestions for research, and also the area

within which most research has been undertaken although it is patchy

and often of limited quality and scope. One of the suggestions arising

from the literature review is that more needs to be understood, and

interventions focused, on collaborative teamworking amongst generalists,

such as clinicians and nurses. The primary health care team is the key

provider of end of life care in the community, and hospital teams are key

providers for people who die in hospital.

Recommendation 1

Primary research to define and evaluate models of primary and secondary

collaborative working at the end of life. This would employ a systems

approach whereby the different forms of organisation (for example of GPs

and DNs working collaboratively in the community, or medical and

nursing teams in hospital settings) are investigated within the context of

collaboration or shared care with specialist palliative care and social

services. Studies should identify current forms of organisation, establish

how well they work, identify best practice and what models lead to

optimum outcomes for patients, families and services, as well as factors

leading to gaps in provision. Studies should investigate and/or test from

the perspective of patients and carers as well as health care professionals

and ideally consider costs to patients, carers and health and social care.

5.5.2 Out-of-hours care

We know some of the problems of out-of-hours care including factors

relating to GP out-of-hours organisations, lack of 24 hour DN services,

variability of specialist palliative care provision and some research on

patient experience. Out-of-hours support is critical because it is when

many usual services are not accessible, when patients are most likely to

see people who do not know their history, and when inappropriate

hospital admissions are most likely to occur.

Recommendation 2

Primary research to define and evaluate models of provision of generalist

out of hours care at the end of life within a systems approach, taking

account of different providers (for example GP out-of-hours organisations,


© NCCSDO 2007 25

DN services, ambulance services, pharmacists social services, specialist

palliative care). The research would assess how service configurations

work in different geographical areas, identifying factors that lead to improved patient care including for example information transfer,

appropriateness of response, availability of drugs, good channels of communication between providers, clear role remits and good

collaborative working as well as factors that prevent optimum care. Models of good practice would be tested in other geographical areas and

under different conditions. The experiences and preferences of patients

and carers should form a major component of the assessment of the

impact of the care models and the costs of different models should be

considered.

5.5.3 Non cancer and older people

There is a systematic literature review on factors affecting place of death

for cancer patients. There is a need to look at factors affecting place of

care and death of patients dying from non malignant disease, in order to

inform the development of better models of service provision, i.e. for

COPD and heart failure patients.

Recommendation 3

A systematic literature review (including grey literature) on place of care

and place of death of people dying from non malignant disease. This

would identify factors affecting transitions of care as well as place of

death for people dying from a number of non malignant diseases such as

COPD, heart failure, stroke and dementia.

5.5.4 Place of care and death

Key issues for research for participants in the consultation included

assessing costs and resource needs related to place of care and death;

assessing patient preferences; improving care in care homes and patient

experiences, staff attitudes and identifying and evaluating models of care

in hospital. Continuity of care, particularly concerning hospital discharge

was also a key area for research. Some research is currently taking place

in care homes, as well as an audit of care in hospital and research on

admission.

Recommendation 4

Primary research to define and evaluate models/organisation of care of

the dying in different settings including A&E; to assess the impact of

different forms of care, together with an assessment of the additional

impact of, for example, the Liverpool Care Pathway and the hospital

palliative care team. This research should be undertaken from

patient/carer and professional perspectives and focus particularly on the


© NCCSDO 2007 26

experience of patients dying from non malignant disease. More research

should be undertaken on how preferences are formed and develop over

time.

5.5.5 Patient and carer experience

The patient and carer experience was a dominant research theme

identified by participants. Because it is such an important and integral

aspect of research, we have suggested that it forms a prominent cross-

cutting theme across models of service provision and place of care.

Most of the literature on patient experience concerns that of cancer

patients, and therefore there is a need to understand more about the

experiences of patients suffering from non-malignant disease. For this

reason we suggest the systematic literature review on factors affecting

place of care and death, and research on dying in hospital for patients

suffering from non malignant disease.

However, there is little research on the experience, support needs and

interventions to better support carers during the end of life phase and

into bereavement and this could comprise another recommendation.

5.5.6 Resources and health economics

This is an under-researched area and an important priority for

participants in the consultation. Because of its importance we thought it

would be appropriate to form a cross cutting theme linked to service

provision and models of care. There are, however, huge unanswered

questions that might suggest this should comprise a further

recommendation. These questions concern what the real resource and

financial costs of care at home, hospital and in care homes are to patients

as well as professionals, together with what effect will/is current

economic policy having on patient care (practice based commissioning

and payment by results).

5.6 Limitations and conclusions

This scoping exercise comprised a review of recent literature and a

consultation exercise in order to determine the priority areas for future

research in generalist end of life care.

The literature review found generalist care at the end of life to be an area

of disparate research activity defined more by the academic community

than by practitioners. The extent of published studies was limited and this

tended to be concentrated at the lower level of the hierarchy of evidence.

Limitations of time and resources did shape the review, however, to focus

on the amount and type of studies undertaken between 2004-2006,

together with important systematic reviews. Little secondary research


© NCCSDO 2007 27

was identified. Service development and innovation in this area typically

comprise complex interventions, which are methodologically and ethically

challenging to undertake. However, most research was concerned with

understanding ‘what was going on’, less concerned with finding solutions

to problems and very few with testing or evaluating interventions. This

needs to be addressed in future research and our investigation identified

promising ways to achieve this.

The consultation was undertaken with a very wide range of practitioners,

commissioners, policy makers, users and voluntary groups within

different geographical locations in England and Scotland. While not

representative of all geographical localities and population groups

associated with end of life care, these provided perspectives from city,

urban, rural areas in England and Scotland and user and different

professional groups. Using a modified form of the nominal group

technique, a consensus was developed on the key research themes that

participants considered to be most important. These comprised models of

service provision, principally concerning out of hours care, generalist

provision and provision for patients with non malignant disease. Place of

care and death was a second major theme. Patient and care experience

was an important crossing cutting theme, relevant to the previous two

areas, as was the theme of resources and health economics. The main

themes were developed in consultation with the advisory group and grant

collaborators. There was considerable enthusiasm from all participants

and recognition that this was a vital area of health and social care and a

very important area for research and development. All were delighted

that the SDO had proposed work in this area.

When comparing the main themes with the results from the literature

review we made recommendations for commissioning research on

• definition and evaluation/testing of models of primary and

secondary collaborative working at the end of life

• definition and evaluation of different models of provision of

generalist out of hours care within a systems approach

• a systematic literature review of place of care and place of death

of people dying from non malignant disease

• definition and evaluation of different models/organisation of care

of the dying in different hospital settings.

A major component of all research should be the patient and carer

experience, which would be a cross-cutting theme, together with

assessment of resource/health economic implications.

Some research on service developments within the above themes may

typically comprise complex interventions, but we recommend flexibility in

design and the use of qualitative as well as quantitative enquiry within a


© NCCSDO 2007 28

mixed methods approach to ensure that sufficient information is gained

on the context of the service to enable consideration of its applicability

elsewhere. This will require a longer term and strategic approach to

research support.


© NCCSDO 2007 29

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Appendix

The appendix tabulates a comparison of the results of the literature

review against key suggestions for research from the consultations, in

order to identify recommendations for research to be made to the SDO

Research theme: Models of generalist provision

Research suggestions made in the consultations

We know the problems and much good practice - what are the barriers

What is achievable without huge resource implications?

Models of care

Develop a consensus on models of care

Evaluate different models of care – hospice at home, GPswSI, DN, telephone advice, leadership roles in hospital wards

Supportive care – what should there be and what should it look like?

How can the core principles underpinning spcs best extended to generalists

What models of care work best for minority groups

What is the patient experience of different models of care

What models of care work well – e.g. GPswSI?

What models of specialist palliative care do GPs prefer?

Organisation

How does EoLC integrate within generalist caseloads?

What is the impact of changes in the organisation of DN teams?

EoLC tools

Do the end of life care tools provide better care, reduce costs, increase choice etc.?

Provide EoLC beds in hospitals, the community, nursing homes and A&E

Case management

Is case management appropriate, who is the case manager?

The disengaged generalist

How to engage and educate the disengaged generalist

Primary/secondary interface

How to improve the interface of generalist and specialist?

Hospitals

What are the attitudes towards death and dying on hospital wards?

What types of support help avoid unnecessary hospital admissions?


© NCCSDO 2007 32

Training and support

What are the skills training needs of generalists?

How can we support excellence in generalists rather than foster dependence on specialists?

Improving access to care

How to improve the postcode lottery

What models of care work best for minority groups?

Exploring cultural differences between staff and patient and the impact this might make on patient and family experiences.

Need to map current services, systems and use

How can access be improved for minority groups, people in rural areas, frail older people and those in areas of greatest social deprivation?

How can national policies support locally determined delivery of best practice?

How to enable access of equipment when needed?

Improving access out of hours

Improving access to social care

Research identified from the literature review and gaps

Systematic reviews

Review of joint working by health and social care providers – highlighted need to shift resource from hospitals to community/home

Published evidence lacks rigour.

Review of GP activity etc up to 2004(Barlcay, 2005)

Barriers to access (Ahmed et al, 2004)

Review of primary palliative care up to 2004 (Burt et al, 2004b)

Review of interactive technologies and videotapes in cancer care (Gysel & Higginson, 2007)

Patient held records (Gysels et al, 2006)

Research papers

Nursing

Nurses role in community hospitals (Hamilton & McDowell, 2004)

Input CNS in nursing homes (Ling, 2005)

Community nurses role (Pieper & DAcher, 2004)

Workload specialist nurse (Weber & Grohmann, 2004)

DN function (Andrew & white, 2004)

DN experience of care for dying at home (Dunne et al, 2005)

DN care for cancer patients (Kennedy, 2005)

DN working in LCP (Jones & Pooler, 2005)

DN experience of working alongside HAH (Sullivan et al, 2005)

DN Perceptions of availability of health and social services (Shipman et al, 2005)


© NCCSDO 2007 33

Education, support needs for DNs in the community (Shipman)

GPs

GP role, service knowledge, priorities (Burt et al, 2006)

GP task perception (Groot et al, 2005)

GP importance to palliative care (Steciwko et al, 2005)

GP home visits (Aabom et al, 2006)

SW (Clausen et al, 2005)

SW – caregivers to dementia patients (Diwan et al, 2004)

Community

Obstacles to palliative care in the community (Goodman et al, 2005)

Primary/secondary interface

Intermediary care between nursing home and hospital (Plummer & Hearnshaw, 2006)

Nursing outreach service in community hospitals (Sharp & Oldham, 2004)

Hospitals

Inpatient respite care (Payne et al, 2004)

Hospital based palliative care teams (Demanelis et al, 2005)

EoL and other tools

Making Eol care principles operational through training etc hill et al, 2005)

Evaluation GSF (King et al, 2005)

Approach to implementation of care pathway for dying (Mirando et al, 2005)

Basic care programme & approach to implementation (Rosenbaum et al, 2005)

Feedback and views on care provided

Life review intervention (Tueman & Parker, 2006)

Symptom control management in breathlessness (Maher & Hemming, 2005)

Perceptions good/bad death, home/hospital (Borbasi et al, 2005)

Current research includes

Evaluation of the end of life care tools

Improving access to services for patients and families

Evaluation of the Marie Curie ‘developing choice’ programme


© NCCSDO 2007 34

Gaps in the literature

Identifying models of care in hospital particularly related to different specialisms

Evaluation of models of supportive care

Team working for GP and DN

What models of care work best for minority groups

Evaluation of models of care in both primary and secondary care

Research theme: Out of hours and emergency care


Assessment

Identifying the scale of the problem

Identifying gaps in provision

Identifying the quality of care

How important is access to 24 hour specialist advice

Avoiding inappropriate admissions

How to avoid inappropriate admissions

How to support carers

How to develop crisis interventions

Improving information flow

How to improve information exchange between agencies

Developments in A&E

Supporting DNR

How to support DNR decisions

Evaluation of different models

Evaluate the different models ooh within in hours context

Training and support

How to better support and train generalists

Access to medication/just in case boxes


What there is

Macmillan consultation/review of provision, gaps and models of good practice published in 2001 – highlighted inconsistencies in provision

Research papers

Hospice telephone service (Campbell et al, 2005)

Handover systems in 4 co-ops (Burt et al, 2004a)

Medical cover in community hospitals (Kerr et al, 2006)

Carers experience (Grande et al, 2004)

Patients, informal & prof carers experiences (Worth et al, 2006)

Anticipatory prescribing to make ooh work (Amass & Allen, 2005)

Levels of care and qualities of ooh care

Referral DN to McM nursing (Aitken, 2006)


© NCCSDO 2007 35

Contribution of DNs & primary care services to care homes (Goodman et al, 2005)

Gaps

The experience of A&E

Evaluation of different models of care out of hours

Improving education and support to out of hours practitioners.

Research Theme: Non cancer and older people


Models of care

What models of care work at the end of life?

Is there a single model sufficiently flexible to accommodate the complex needs of patients?

What models are cost effective?

What interventions are likely to be effective?

Identification

How and when to recognise palliative care needs; prognostic indicators

Importance of looking at specific diseases; where are there registers; where are there gaps?

Communication

How to discuss EoLC with non cancer patients?

Preferences

Do non cancer patients want to be referred to spcs?

Collaboration

How can generalist/specialist and spcs best work together?

Specialist palliative care

What would be the impact of opening up referral of all long term conditions to spscs?

What are the views of spcs teams?


Systematic reviews

Freeman: continuity

Little evidence on improved outcomes on discharge planning for older people

Review of prediction of prognostication for older adults with non cancer

Review (Gruenewald & White, 2006) on concerns of older people when approaching death

Only literature on Cancer, older people COPD (6) , dementia, heart failure (2), chronic kidney disease, MS, younger people, carers

Research Papers

Non-cancer lack of palliative care (Jaul & Rosin, 2005)


© NCCSDO 2007 36

Communication of EoL choices for older people (Dobbins, 2004)

Development of outcome measures for older people in nursing homes (Saliba et al, 2005)

EoL planning for older people in community (Kahana et al, 2004)

Comparison of EoL preferences of older people (Haydar et al, 2004)

COPD patients in last year of life (Elkington et al, 2004)

Components of good care for COPD patients

Current research

COPD palliative care needs of patients (Borgsteede et al, 2006)

Impact of breathlessness (including cancer patients)

Palliative care needs of patients with end stage renal failure (Ahmad)

Palliative care needs of stroke patients

Extending palliative care approaches in neurological care (Higginson)

Palliative care for cardiac patients

Evaluation of innovative hospice services for non-cancer patients

Gaps

Little evidence around care for dementia; need for development of prognostic indicators, predicting time of need for palliative care.

Models of care for non cancer patients in primary and secondary care

Research theme: Place of care and death


Home

Costs and resources

What are the full costs of keeping at patient at home

What services are needed to provide effective EoL care

Are sufficient resources allocated to all services?

How do costs vary between home and hospital

Organisational responsibilities

Where do organizational responsibilities lie?

Preferences

What are patients preferences for place of care and death

To what extent do carers want death at home and how can they be better supported

How much information should patients/carers have to enable a choice of place of care: at what stage should this be given?

Is communication of information a barrier to choice?


© NCCSDO 2007 37

Support at home

What physical and emotional support is given in people’s homes?

What stops a patient dying at home, what facilitates it?

EoLC tools

Do EoLC tools lead to improved services for patients and carers

Prognostic indicators

What prognostic indicators should trigger care packages?

Care home

Assessment

Is basic care being provided?

What is the level of need?

How can EoLC be improved?

What support do care homes

need to prevent emergency admission?

What is the understanding of palliative care in nursing homes?

Can care homes cope with the complexities of EoLC

- Why do patients in care homes get treated differently?

Skill mix and staffing

What skill mix is needed to deliver good EoLC?

Is care better where DNs are involved?

Training

Training of staff: who does it and does it make a difference

What support do staff need?

Culture

How do language, age and culture impact on care?

Hospital

Patient experience

What is the patient experience in hospital?

What effects do sudden admissions have?

Models of care

What the different ways the dying are cared for?

What are the most effective ways to organize care?

What models of specialist care would generalists prefer?

Rigorous evaluation of different models.

How best to coordinate care

Staff attitudes


© NCCSDO 2007 38

What influences staff attitudes to the dying?

What are the views of different hospital specialties?

Continuity of care

How to get people home more quickly to die at home?

How can continuity of care be improved between hospitals and generalists (pathways?)

How to develop inpatient and outpatient palliative care?


Systematic reviews

Systematic review of cancer (Gomes)

Research papers

Home care – including study on nursing homes (Ling, 2005; Dunne et al, 2005; Goodman, et al, 2005; Albert et al, 2005; Allan et al, 2005; Appelin & Bertero, 2004; Goldschmidt et al, 2005)

Community hospitals (Saliba et al, 2005; Hawker et al, 2006; Payne et al, 2004)

General hospitals (Mirando et al, 2005; Jaul & Rosin, 2005)

Residential

Post acute setting (Hanson & Ersek, 2006)

Trends in age and location of death (Ahmad & O’Mahony, 2005)

Admissions to hospital (Hawley & Monk, 2004)

Informal care and home death (Visser et al, 2004)

Ongoing research

National audit of care in hospital

Why patients are admitted to hospital and care received

Evaluation of EoLC tools including LCP and GSF

Systematic review on preferences for place of care of non cancer patients

Palliative care in care homes

Gaps

Gaps in knowledge of factors affecting choice and place – particularly for non cancer

Patient experience of different models of hospital care

Different forms of organisation and models of care in hospital

Interventions in hospital to improve the care of the dying

Improving continuity between secondary and primary care


© NCCSDO 2007 39

Research theme: Patient and carer experience


Patient perspectives

What do patients want from care providers?

How to generate patient and family trust in services?

What do patients know about what they can access and expect?

How to understand the journey.

Understand the views of different patient groups

What are patient experiences in different care settings – what are the gaps in our knowledge?

How does patient experience vary by PCT or service model?

What is the level of patient experience of care we are aiming for?

Is there an effective method of monitoring patient feedback – particularly hard to reach

Service provision

What is realistic for NHS providers?

How to generate informed care plans owned by patients and carers?

What promotes dignity for patients and carers?

Communication

How do we communicate realistic expectations about access and effectiveness?

How to improve access to advice and information


Systematic reviews

None

Research papers

Measures of impact of care on outcomes for users.

Articles

Patients views

Experience of home care by DNs (Appelin et al, 2004)

Patient (heart failure, COPD, cancer) and GPs views on EoLC (Borgsteede, 2006)

Views of patients, carers and GPs on EoLC (COPD) (Exley et al, 2005)

End of life preferences in elder people with dementia and CHF (Haydar et al, 2004)

COPD –(Elkingston et al, 2004)

OOH care – advanced cancer patients and carers

Carers views

What valued from GP and DNs (Grande et al, 2004)

Care at the end of life (Exley et al, 2005)


© NCCSDO 2007 40

Community hospitals (Hawker et al, 2006)

Dementia in nursing home and home care; retrospective views of carers (Mitchell et al, 2004)

Experience of ooh care and support services (King et al, 2004)

Ongoing research

Finding sensitive and effective ways to convey information about Eol issues to users/carers and the public

Understanding more about palliative care for older adults at the end of life

Psychosocial needs

Gaps

While services focus on carer’s views of patient care, little recent work on carers needs and preferences.

Literature review of the experience of end of life care – especially for non cancer patients

How best to support carers

Patient experience of user involvement.


© NCCSDO 2007 41

Research theme: resources and health economics

Research

identified from

the literature

review and

gaps

Costs

What are the full costs of keeping at patient at home?

How do home and hospital costs compare?

What are the costs of good clinical interventions?

What is the different cost effectiveness of different models of care?

How can we cost EoLC?

Resources

What actual material and social resources are needed at home and correlated to place of death?

Priorities

What are patients/public priorities on funding services?

Economic evaluation

Economic evaluation of informed choices at EoLC

What can be done without huge resource implications?

How much variation in spending between practices, PCTs and SHAs?

Practice based commissioning

Will PBC clusters shift resources to or aware from EoLC?

Will PBC favour in-house multi-skilled nursing in GSF and bypass specialist palliative care services?

Funding responsibilities

Who should be funding which components of care (health/social)?

Should the NHS fund voluntary care/hospices and what would be the implications of funding or not funding?

Financial barriers

What are the financial barriers to providing care?

Quality of data

How can we improve the quality of data?

Influence and impact of costs

What are the incentives for hospitals to improve EoLC?

What are the relative costs of generalist and specialists?

Does cost cutting damage quality?

If resources were available, would minimum standards change?


Systematic reviews

None

Research Papers

There is little research in this area. The review identified:

− Time and cost of medical tasks for cancer in the community (Raphael


© NCCSDO 2007 42

al, 2005)

− Expenditures for dementia patients at high risk of dying (Newcomer et al, 2005)

− Comparison costs: home v hospital cancer care

Gaps

Widespread

Particularly full costs and resource needs in different places of care

Impact of current financial initiatives, eg PCB and PBR.


© NCCSDO 2007 43

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This document was published by the National Coordinating Centre for the Service Delivery and Organisation (NCCSDO) research programme, managed by the London School of Hygiene & Tropical Medicine.

The management of the Service Delivery and Organisation (SDO) programme has now transferred to the National Institute for Health Research Evaluations, Trials and Studies Coordinating Centre (NETSCC) based at the University of Southampton. Prior to April 2009, NETSCC had no involvement in the commissioning or production of this document and therefore we may not be able to comment on the background or technical detail of this document. Should you have any queries please contact [email protected].

Disclaimer: This report presents independent research commissioned by the National Institute for Health Research (NIHR). The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the NHS, the NIHR, the SDO programme or the Department of Health.

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